Review: Let the Rest-e take the iPad strain

Tania writes

I was recently contacted by a lady asking for help publicising a new product called a Rest-e that takes the strain of holding iPads, hardback books or other mobile devices for long periods that children and adults with disabilities might find difficult.

Chime Carlin said, “My friend and I have started a new business designing, making ourselves and selling really useful products but in fabrics that attractive to the eye too. The Rest-e was our idea of a tablet stand that didn’t keep falling over when the touchscreen was used. My friend’s daughter has disability issues that make her hands tired when holding the tablet for long periods and this was our solution.

“Then we found the cable kept getting squashed which weakens the wires and then stops working so, we added a button hole which prevents the wires from being crushed. We added the loop for easy carrying and so it can be hung up on pegs when not in use. The light weight means anyone can transport it and we throw our in the car (they double as head rests as they are so comfy).”

son2-2

Chime’s email came into my in-box just at the right time, as I was looking for something for Son2 and also for myself, as we both find that our EDS gives us the very same issues. I had already tried a goose-neck stand that clamps onto nearby furniture with limited success.

Chime kindly agreed to send one for Son2 to try out and it has been a HUGE hit. It’s a pyramid shape, filled with bean-bag type beans in a hard-wearing cover, that can be custom ordered. We’ve all tried it out and the consensus is, it’s fab!

It is something that we would have bought if we’d seen it online, even if we hadn’t been sent one to try out.

son2-1

They also make a smaller size Rest-e for a charging stand for mobile phones and they make them in various colours and designs. They have a Facebook page at  www.facebook.com/readingrest

The Rest-e retails at £15 and features:

  • Ergonomic design helps reduce neck strain and awkward posture
  • Light-weight and portable, it can be effortlessly carried by children
  • Supports hands-free reading – ideal for Special Needs
  • Facilitates group-sharing activities – enabling you to maximise resources
  • Enables device usage whilst charging ensuring no  time is wasted
  • Versatile – for real books, e-books, i-pads & sheet music
  • “Rest-es” can be coordinated with your organisation’s colours
We are so delighted with the one we were sent in a jolly union flag design, that we’re planning to order more for other family members.
And, Chime, whose company is Betty-May, www.betty-may.co.uk, is offering one lucky Special Needs Jungle reader a chance to win one too. Just fill out the form below for your chance to be picked from the hat by Son2.
Because it’s the summer hols, we’re keeping the draw open until midnight on August 31st 2013 which should give anyone away chance to see the post and enter. 
Enter using the form below. Good luck!
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Is parental co-production just smoke and mirrors?

Tania writes…

If you’re a regular reader of Special Needs Jungle you will know what big advocates we are of parental co-production when decisions are being made about services for our special needs children.

A booklet all about co-production in the South East SE7 pathfinder, compiled by all parties involved including parents, defines Co-Production as “Co-production is one approach within participation and in SE7 Parent Carer Participation is welcoming parent carers to the strategic decision making process as full partners from the start”

You can download this booklet yourself here.

smoke-mirrorThe reforms are now moving into a second phase in the pathfinder areas where those local authorities and parent carer forums involved are working out how to implement the ideas they have been testing out. At the same time, some of these pathfinders have been named as ‘champions’ and are tasked with guiding the non-pathfinder authorities how to get with the programme.

All along, we’ve said here on SNJ that cultural change is the key to making a success of the reforms. That you could change all the laws you wanted to but nothing would be any different unless the LA staff carrying out the new system fully bought into the new person-centred, outcomes-focused ethos, where the parents’ and the children’s views were central to the process.

The reforms were needed in the first place because of the bruisingly adversarial and expensive practice that had built up over the years where many working in SEN seemed to think that taking on parents and their special needs children was some sort of gladiatorial sport. And ‘was’ is the wrong tense, sadly. It’s still going on all over the country, right now, despite the reforms speeding along faster than a Japanese bullet train.

At one of these ‘champion’ meetings recently, a non-pathfinder LA staff member was heard to remark, “Why can’t parents just be parents and professionals just be professionals?” In other words, we like the system the way it is, with us in charge and the parents in their place.

This viewpoint is not unusual and, I am disturbed to report, it’s not even unusual in the very areas that are leading the reforms. Many of the people who should be leading the new way forward , injecting culture changes with positive enthusiasm, have either never got fully on board or were just pretending to be in favour while quietly hoping they would soon be able to say, “Oh, yes, parental co-production. We tried that last year. We didn’t like it. It took too much time. We’re too busy giving them what we think they should have.”

So, in order for these reforms to make a jot of difference, a rapid and urgent process of ‘re-education’ needs to begin. Actually, it needed to begin at the same time as the reforms began to be developed.

…Most of parents have additional needs themselves..,, the problems we come across regarding health are dealt with in house …there’s no need to bother the parents about stuff like that… [Précis of comment from a senior SEN practitioner at a recent reform conference. Name withheld to save their blushes.]

But who is going to lead this massive undertaking? Who is going to make all these people, many very senior, have a complete change of heart and begin to openly welcome parents at the decision-making table, to value parents’ views as highly as they value their own and those of their ‘professional’ colleagues.

Nothing, I fear, short of the threat of job loss and maybe not even then, is going to do this. These views that parents should only vaguely be seen (preferably from a distance) and definitely not heard are so very deeply entrenched. And if they are still held within pockets of some, if not all, of the pathfinder authorities after 18 months of reform development, how the bloody hell are we going to change them in those authorities who are completely new to the whole idea in the remaining time before Royal Assent?

And how long will it be before having parents at the table becomes tiresome? After all, we know their views, they’re just the opposite to ours, aren’t they?

They are hoping, no doubt, that parents and those fantastic, hard-working LA staff who do believe in this reform (because there are many) will become exhausted, marginalised and may give up, and the role of parents will become minimised and then, non-existent. Again.

I urge the Department for Education and Mr Timpson to take this warning very seriously.

Your reforms are in grave danger of becoming a battleground of dashed hopes and disillusioned and furious parents who have worked so hard, turning up for meeting after meeting, even when so often, half those LA and most of the NHS staff nominated to go didn’t put in an appearance.

Mr Timpson, you must make it your business to oversee a firm policy of ‘change your ways or leave’ for those within SEN up and down the country who think they can just wait it out and go back to business as usual. It’s like giving us a fab new toy but saying you can’t be bothered to get us the right batteries so it works properly.

Taking a firm stance is the ONLY way because the stakes are too high for thousands of parents and vulnerable children whom you profess to want to help.

And I do believe you want to make a difference. I do believe that your department wants to make a difference. But if you do not take speedy and deliberate steps to ensure a change in attitudes of the people who will administer the new system on a daily basis, I fear that it will be back to business as usual with parental co-production becoming a fond but distant memory.

Labels: Love or Loathe them?

Deb writes…

Are labels a help or hindrance?  Do you love them or loathe them?  Do they change the way you or your child are seen?  Do they change the way you or your child are treated?

What about the labels given to the parents?  Oh yes, we all know they happen.  I asked a group of friends what labels they had been given by family, friends and practitioners and if they thought they impacted on the way people interacted with them.  Some of their responses made me genuinely laugh out loud but some were just a touch too close to home.  So what labels are parents given – do you recognise yourself in any of these?

Labels c. SNJThe Bubble Wrap parent.  Also known as a Cotton Wool parent.  This parent is judged as being too protective, hindering their child’s development.  They are seen as not allowing their child to experience life or not allowing their child to take normal risks.

The Bolshy Demanding parent.  Also known as the Rottweiler parent.  This is the parent who is educated and knows what the standards for services should be.  This is the parents who refuses to take “no” as an answer; the parent who will stay up all night reading the Education Act or the Equality Act so they can challenge decisions made.  This is the parent that the good practitioners admire and the bad practitioners detest.

The Competitive parent.  Also known as Oh no, here they come parent.  This is the parent that other parents dread bumping into.  The one who wants to constantly tell you just how much harder it is for them than you.  The one who makes other parents walk away from support groups believing they don’t belong there as their child isn’t disabled enough.

The Coping parent.  Also known as the Brave parent.  This is the parent who, from all appearances, seems to be dealing with everything perfectly.  They just get on with it – or so it would seem.  This is the parent who never asks for help and rarely, if ever, complains officially.

The Helping parent.  Also known as the Hindering  or Controlling parent.  This is the parent who supposedly hinders their child’s development by helping them too much.  The parent who will do “things” for their child instead of allowing their child to learn to do it themselves.

The Neurotic parent.  Also known as the Over Anxious parent.  This is the parent who looks for problems that don’t exist.  The one who refuses to accept “they’ll do it when they are ready”, the parent who thinks their child is not developing at the expected rate.

The Unengaged parent.  Also known as the Hard to Reach parent.  This is the parent that doesn’t access services, doesn’t respond to surveys; the parent who doesn’t always show up for appointments.

SuperMumAnd let’s not forget everyone’s favourite – the Special parent.  Also known as the Super Hero parent.  This is the parent who  gets told   “I don’t know how you do it”, “I think you’re amazing”  “I wouldn’t be able to do what you do” and the ever popular “only special people get special children”.

So which label fits you?  If you are anything like me, then you will have heard most of these at one time or another.  Usually I am known as the bolshy, demanding rottweiler (and yes, I was actually called that) and the coping parent.  Oh, and of course, the “Special” parent.  Which means that when I find myself having a bad time and not coping, no one quite knows what to do with me.  I had been put into a lovely little box and I fitted in there nicely – how dare I come out of it!

Often, this is what happens with our children.  They are given a label and society/family/practitioners all have different expectations of what that label means.  For example, Autism can mean “rain man”, “no eye contact” or “just naughty” depending who you speak to (and how your child presents at that particular time) but as any parent will know, our children are individuals and have their own personalities.  They also have good and bad days – why should a label change that?

We often label practitioners.  Supportive, waste of time, self-interested, my life-line, pen-pusher and the list goes on.  How often though, have you had met a practitioner and thought they were fantastic, only for a friend to be shocked because their experience had been very different?  Does that mean practitioners are individuals, have their own personalities and have good and bad days too?

So, if this applies to our children and to practitioners, then obviously this means we too are individuals with our own personalities.

Why should a label change that?

Making the Disabled Children’s Charter a health priority

As you are hopefully aware, the beginning of April saw a massive shake-up in the NHS and the creation of GP-led Clinical Commissioning Groups as well as Health and Wellbeing Boards.

The Health and Wellbeing Boards bring together key leaders from the local health and care system to develop a shared understanding of the health and care needs of their local communities and how to address them. They are intended to drive local integration between health, social care and wider partners and reduce health inequalities.

EDCM logoBut with the many priorities that these new bodies will have, the charities Every Disabled Child Matters and The Children’s Trust, based at Tadworth in Surrey have launched our Disabled Children’s Charter for Health and Wellbeing Boards to ensure that children with special needs, health conditions and disabilities stay at the top of the agenda.

Because these children often need to access services from across the spectrum of health and care and specialist education services, they are especially vulnerable to suffer the effects of a lack of integration and cooperation between the providers of these services. This can lead to their needs not being adequately met or their families having additional financial burdens placed upon them.

charter_coverThis is why these two fantastic charities are calling on all the England’s Health & Wellbeing boards to sign up to the following seven key pledges:

By [date within 1 year of signing the Charter] our Health and Wellbeing Board will provide evidence that:

1. We have detailed and accurate information on the disabled children and young people living in our area, and provide public information on how we plan to meet their needs.

2. We engage directly with disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

3. We engage directly with parent carers of disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

4. We set clear strategic outcomes for our partners to meet in relation to disabled children, young people and their families, monitor progress towards achieving them and hold each other to account.

5. We promote early intervention and support for smooth transitions between children and adult services for disabled children and young people.

6. We work with key partners to strengthen integration between health, social care and education services, and with services provided by wider partners.

7. We provide cohesive governance and leadership across the disabled children and young people’s agenda by linking effectively with key partners

CTrustThe Charter is accompanied by a document: Why sign the Charter? which explains the value of the Charter commitments with reference to Health and Wellbeing Board statutory duties and powers, and signposts Health and Wellbeing Boards to resources that will help them fulfil each commitment. It also includes a guide to the evidence that Health and Wellbeing Boards could provide to demonstrate that they have met the Charter commitments.

The Government recently responded to the report of the Children and Young People’s Health Outcomes Forum by releasing ‘Better Health Outcomes for Children and Young People: Our Pledge’. This set out the shared ambitions for all agencies in the new health system to improve the health outcomes of children and young people in England. This Charter is aimed at providing a tool for Health and Wellbeing Boards to deliver on these ambitions for a key group of its local population.

The EDCM & The Children’s Trust have jointly sent the Disabled Children’s Charter to every Health and Wellbeing Board in England and asked the Chair to sign it.

You can support their campaign by sending an email to your Health and Wellbeing Board Chair and urging them to sign it too. Find your local Health & Wellbeing Board here or just search for your top-level Local Authority where you live and “Health & wellbeing board”

Looking at our own HWB in Surrey, the board does not have any representatives from the voluntary/community/minority services or any parent representation. I find this something of an anomaly in these new days of transparency and co-production.

What does your local HWB board look like? Does it give you confidence that it will sign up to and can deliver the Disabled Children’s Charter?

Download the Disabled Childrens Charter for HWB

Download the “Why sign the disabled children’s charter for health and wellbeing boards” document here

Chinese Whispers and Garth’s Uncle

As you may have read on Friday, Special Needs Jungle has a new regular contributor in Debs Aspland, the director of Kent PEPS and parent of three children, all with disabilities. Today is her first post about the essentials of good communication.

Communication:  the imparting or exchanging of information or news

It sounds so easy.  It requires one person (the sender) to give another person (the recipient) a piece of information.  The communication is complete when the person receiving the information understands what the person giving the information has said.  So why is it so difficult?

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Real tips from real carers – a new tool from NetBuddy and NHS Carers Direct

Netbuddy has been working with NHS Carers Direct to pass on practical advice, tips and ideas from carers of people with learning disabilities to other carers.

‘Real tips from real carers is a new tool created by NHS Carers Direct and Netbuddy. It offers a selection of tips submitted by carers under four separate headings – Communication, Healthcare, Personal Hygiene, Behaviour and Routine.

The tool is live on the Carers Direct website and a version of the tool is also available for people to put on their own websites.

Netbuddy director, Deborah Gundle said: “We are so pleased to be working with Carers Direct to share these great practical ideas from people with everyday experience of caring for people with learning disabilities. Working in partnership with other organisations like Carers Direct allows us to reach more carers who can benefit from Netbuddy. We really hope more people will come forward and ask for the ‘Real tips from real carers’ widget on their website.”

Carers Direct website editor, Rob Finch, said: “The best advice comes from experience. Netbuddy is an amazing way for carers to get the benefit of the experience of others in similar situations.
“The tool that Netbuddy and Carers Direct has created is a really simple interactive gizmo that could help share dozens of these great tips with a wider audience of carers. We hope that these tips will make real changes the lives of carers – and the lives of those they support.”
You can find top tips for helping children with SEN and disabilities at the NetBuddy website. You can also offer your own tips as well!

Don’t Write Me Off – NAS campaign

The National Autistic Society has today released figures showing that only 15% of adults with an autustic spectrum disorder are in full time paid employment.This means that 85% of the 300,000 people with an ASD may only find part-time work, most probably low-paid and rely on family for support and benefits for income. The NAS also says that many of those who do rely on government help are finding it extremely difficult to navigate the benefits system since changes were made to incapacity benefit.

From The NAS Campaign, Dont Write Me Off

From The NAS Campaign, Don't Write Me Off

We are not talking here about the work-shy, we are talking about people who want to work, to have some level of independence but who find the world just isn’t set up to help people like them. The NAS is launching its ‘Don’t Write Me off’ campaign and says a key problem is that staff at the Jobcentre Plus, where jobs are advertised and who decide which benefits someone is entitled to, have a lack of understanding of autism.

This statistic is extremely worrying for us as a family with two sons with Asperger’s Syndrome.Although our children are both in a school where learning skills for life is an important priority, what happens to them if they encounter problems through ignorance or prejudice from those in authority when they go out into the wider world? It is the aim of the school that by the time they leave, they will be as well equipped as anyone else, if not better, to deal with adult life but as we parents of ASD children know, for them, unexpected and unforseeable events can be extremely difficult to deal with.

The NAS found that:

  • just 15% have a full-time job
  • one-third are currently without a job or access to benefits
  • 79% of those on Incapacity Benefit want to work.

The National Autistic Society is demanding that the system should be made to work for people with autism and the Government must deliver on its commitment that no one should be ‘written off’. It says adults with autism need:

  • Employment and Support Allowance to work for them
  • Jobcentre Plus staff to understand and meet their needs
  • a national strategy to transform access to employment.

I have just emailed my MP, Jeremy Hunt in Surrey South-West to ask that he supports this campaign. You can do the same with your Member of Parliament using this link: http://www.dontwritemeoff.org.uk/ It takes just a couple of minutes and you can feel satisfied that you have done something today to help people with autism.

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Daily Mirror Launches Caring For Carers Campaign

The Daily Mirror is today launching a new “Caring For Carer’s” campaign to highlight the disgraceful situation regarding the level of benefits for people who care for disabled relatives and friends.

At the moment, Carer’s Allowance is just over £53 a week, no matter how many people you care for. Both my sons qualify for Disability Living Allowance for their ASD and so I am entitled to receive this paltry amount. But, should I be lucky enough to be able to find a part-time job that I can do while they are at school, I cannot earn more than £95 a week net or I lose the benefit.

Before I had children I could earn up to £200 a day. I had intended to go back to work after they were born, but because of their disabilities, I was not able to leave them in the care of anyone else. To do so would have meant finding a specialist nanny, the cost of which for two children would have wiped out my earnings. Added to this, the fact that a journalist’s life is shift-working and the situation would have been untenable.

When my sons were in mainstream school they would sometimes refuse to go because of the stresses they faced in that environment, meaning I would have to have them at home all day. What kind of employer could put up with a worker needing great chunks of time off? My youngest needed one-to-one swimming lessons as he could not cope in a group and this was expensive (and every child should learn how to swim if they are able). I also helped out in school several times a week because I felt so guilty that they were difficult to cope with.

Now, despite the fact they are both at a specialist school, I am still unable to get a full-time job because of the long holidays they have. I cannot leave them in a holiday scheme because they would find it distressing which would have a knock on effect for their lives and ours as a whole. So, we must rely on my husband’s income (and he was out of work for six months this year), our boys’ DLA and my princely sum of £53.10 Carer’s Allowance. We live in Surrey, an expensive part of the country, because it is near to their school. We are only glad that their fees are now paid by the LEA or we would have to sell our house and seriously downsize to afford the cost. Before the LEA agreed to take responsibility for the fees, all the DLA and Carer’s Allowance went towards making a small dent in the special school fees. Even now, it still disappears into the great well of  things they require for school and to support their special needs.

But still, I would say that we are lucky because we have at least one decent income (that my husband has to travel three hours a day to earn). What if something happened to him (God forbid)? Then I would have to care for all three of them on £53.10 a week. This is the situation for many carers today. Many face huge debts as well as the stress of caring for someone who is sick or disabled or the headache of making ends meet on a pittance.

This is what the Daily Mirror says:

These are the Mirror’s three demands for the Caring for Carers campaign, which we are launching today:

An immediate Government review of carers’ benefits and the Carer’s Allowance to be increased.

More respite breaks and health checks for carers.

Carer’s Leave to be made into law so carers can ask employers for discretionary time off work.

I whole-heartedly welcome this campaign and hope you will support it too. How can you help? You can visit the Daily Mirror’s blog page by Emily Cook to read the whole story. Then you can visit the Carer’s UK site to sign their Poverty Charter in support of the campaign. If you’re reading this you probably have an interest in special needs, so I hope you will take a couple of minutes to do this. I am a carer, though lucky enough not to be on the poverty line. After our recent brush with redundancy though, I know that could change in the blink of an eye. So I am sighing the charter and will do anything I can to support this worthy cause and I hope you will join me.

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Parents rate local authority Disabilities service at 59%

When I was at school, a score of 59% definitely meant ‘could do better’, if not ‘should do better’. But that’s the score received by 10 local authorities in England for their disability services.

The survey, completed by the British Market Research Bureau on behalf of the government was intended to measure parental experience of services for disabled children. The survey and indicator have been developed as part of the Aiming High for Disabled Children programme.

It is the first ever national survey of parents’ views of services for disabled children. Parents completed a questionnaire asking for their views of health, social care and education services for their disabled child as experienced in the past year.

Srabani Sen, Chief Executive of Contact a Family said, “The views of parents should drive local authorities and primary care trusts to ensure that the right services are available to meet the needs of disabled children and their families. This new data is vital in emphasising the key part that parents and families have to play in improving services for disabled children. We know that these services work best when parents are involved in their design and delivery, and I hope that local areas will be able to use the results to continue the good work that many of them are already doing to engage with parents and develop services together.”

The fact that they are measuring this to determine a baseline for future improvements is great, but 59%? Just over half? That’s a lot of people who are dissatisfied with the care and education their disabled children are receiving.  It is clear that this kind of rating of services is long overdue and that many local authorities need to try harder to provide a satisfactory service to vulnerable children who need the greatest help.